Losing at the End Game

Mom died, aged 86, at 7:20pm on 27 Jan 2015 in her nursing home bed in Florida. Her death certificate states 8:59pm because that is when the hospice chaplain finally arrived to confirm her death. I had an hour and a half mainly alone to discuss with my mom everything I’d wanted to talk to her about these past 59 years; much I never told her when I could and those newer additions from the past five years when she showed little sign of listening or comprehending. It was a lovely time actually – holding her hand, watching it change from a warm pink to a cooling blue as her blood was no longer oxygenated to a pale yellowy white as her blood slowly ebbed under the pressure of gravity.

I took photographs too, when no one was there to exclaim their disgust. Over the years during my twice yearly visit to the senior home where my parents had moved after mom’s Alzheimer’s proved too much for dad to manage on his own, I took many pictures of her slow descent into nursing home hell, documenting as much as possible, her increasing frailty, her growing look of bewilderment, horror, and, increasingly obvious, a deep, intense physical pain. Mom had osteoporosis and arthritis in addition to Alzheimer’s. She’d wander, fall, break, need surgery, wander, fall and break again. Each cycle of pain, anesthesia, surgery, and mending pushed her further into the dark endless abyss of Alzheimers.

The first week of my return visit this January, the physical pain mom suffered was undeniably apparent. I told dad that this was more than I would take. Would he support me if I took steps to ensure her passing? He replied as he always did, in silent avoidance. Dad was part of the problem, not wanting to face up to or witness the changes ravaging mom’s mind and body. He diligently visited her in the Alzheimer’s ward, called the Lodge, three times a day: after his breakfast at around 7:30 till 8am, to feed her lunch at 12 (up to the time when he had surgery on his prostate about a year ago and no longer could manage to feed her), and again after his dinner, from 7 till 8 when the aide came to take the 12 hour night watch over my mom. This was the condition under which they would take her into the unit – a personal aide would ensure she didn’t try to get out of bed to wander during the night. So this became routine – mom in her wheelchair in the common room with 17 or so other Alzheimer’s residents, watched over by 4 to 5 nursing staff from 8 am to 8 pm. Unlike the other patients, many of whom were fairly mobile, I never saw mom communicating or developing a friendship with anyone. She simply sat in her wheelchair, staring into space or dozing, every day from 8 till 8, for five long years.

I arrived again in Florida this early January from my home in Central Java, in Indonesia following a 40 something hour trip, 4 plane changes and crossing 12 time zones. As usual during my twice-yearly pilgrimage, I followed dad’s pattern of never seeing what was really going on in between dad’s programed visits. It seemed better to only see mom when the aides had prepared her, dressed her, cleaned her up, and had her seated in her wheelchair at the first table in the common room. Seeing her outside of these staged ‘safe mode’ moments had been traumatic. Seeing the aides moving her in or out of bed showed how painful every slight movement was. Over the past two years, her left hand, her arms and legs had literally frozen into her seated wheelchair position. Dad said it was arthritis. I didn’t want to imagine how painful this must have been. Seated for 12 hours a day every day in the common room had caused not just her limbs to shrivel and lock, but sores to bloom on her back, buttocks, and thighs. But we never needed to see this. The aides all knew dad’s schedule and made sure mom looked fine at these times. But she wasn’t. She was clearly in pain without the energy to move, speak or cry. It was there now, undeniable in the tension that distorted her once beautiful face.

The Euthanasia Quandary

There were good reasons for my not wanting to see mom outside of safe mode. Before she lost her ability to speak, three years ago when she could still make brief, sensible utterances, I had sat with her after dad’s 8pm departure as we waited while the aide did mom’s laundry. Mom reached for my hand, glared at me, and groaned, “Help me die! Do not leave me like this!” Then she faded back into her fog leaving me trembling in fear and guilt. Six months later I returned to visit, and again, after dad left and we were alone, she stared at me for a bit, then said slowly and clearly, “Help me die!” These were the last meaningful utterances she was to make to me. In the years to follow, she didn’t speak beyond a few simple words but she did stare at me with a longing; a look I interpreted with intense guilt. I visited her in the Lodge less often on my Florida sojourns. “I’m coming to see you dad, not mom. She doesn’t know me,” I’d say over skype with dad, justifying my avoidance.

Over the years of regular visits to my folks in the senior living center, I became close with many of the residents, who were thrilled to share their stories, their experiences and attitudes toward a death that was clearly close at hand, and even welcome. We watched the PBS documentary “Death and the Civil War” and marveled over the changing attitudes toward ‘a good death’. We spoke about death as a choice, sharing information from various perspectives, from Indonesia where I live, from history, and from advanced age in the US. They told me how and why many chose to avoid continued treatments, intentionally overdosing on their meds, or simply refusing to eat once their remaining dignity is compromised beyond acceptability. We spoke honestly and openly about euthanasia and how I was prepared to help mom if I could find the right approach. As hard as I tried, I could not get hold of the drugs they recommended. All other suggestions were too radical and could result in my being charged with her murder. Withholding food and water seemed overly cruel as mom’s lifelong pleasure was eating. Besides that, withholding her feeding would require cooperation from the Lodge staff, something I was obviously not going to get. Despite mom and dad both having a living will, there was no plug to pull.

So rather than face the fear of mom’s anger and disappointment at my utter failure to provide her with that much needed release, I simply avoided time alone with her. Safe mode only, in the busy common room where she sat, from 8 am to 8 pm, her body molded and locked into her seated position, sores bloomed; boredom and pain destroyed any remnants of the vibrant woman I once knew as Mom.

Action and Inaction

We are programmed to avoid and fear death. Yet, my love for Mom forced me to cut through all the panic and disbelief so I could focus more on her needs and begin to make decisions. Even then, it took several years to understand the situation she was trapped in as I watched her deteriorate enough to force me to take that huge leap into an unknown minefield.

On this last visit, mom’s frailty and pain were too obvious for me to avoid or ignore. It was time for decisive action – decisions too hard for dad, but not me. It was time to start openly questioning medical practices that preserve life at any cost, the avoidance of death, the fear of witnessing a loved one’s pain, and professional aides that keep their charges alive even when there is no humane reason for it.

Dad knew in his heart what needed to be done but could not or would not take the steps to authorize it. He avoided talking to her doctors or the nurses – just the standard hellos and general cheerfulness during his regular daily visits. But dad was willing to go along with anything I’d suggest, like a blind man trying to navigate a dreadful maze. With dad’s help, I was made both their health surrogates and given power of attorney. Next, I tried to speak with the hospice nurse in charge of my mother. I made my wishes known outright. I love my mother; she needs to die. But these are not words one can speak here. The nurse was well trained in diplomacy, saying only that her job was to visit daily, wash mom, make her ‘comfortable’. The closest she ever said to mom’s dying was “She’s in transition.” The hospice offered absolutely no solutions to my increasingly desperate need to put an end to my mother’s suffering.

Next step was to see the head nurse and demand to see and have explained all her meds. Mom was on 18 different drugs, 12 of which are advertised daily on TV. None were for pain management. None made any sense to me. Why on earth was she given acid reflux pills or 3 different anti depressants? Name any of the arthritic drugs you see on TV and she was on those too – with no obvious benefit. I demanded they stop all, including her diabetes, cholesterol, and heart meds (even though I sincerely doubt she had these problems), and start her on morphine for the pain. I was also vocal about wanting the morphine to affect her appetite and the aides to stop force-feeding her. Morphine, I knew, would not just diminish her appetite and lessen the pain, but would also make her sleep more, slow her respiration and ease her into death. It took three days and three phone calls from doctors objecting to my demands before mom was finally put on pain meds and taken off the rest.

Meanwhile, I also demanded the nightlong personal aide be shifted to day so mom would not need to be moved, dressed, and relocated into her 12 hour wheelchair hell routine. I did not want her out of bed and I wanted the aide to turn her every few hours so hopefully the bedsores would begin to heal. Moving and dressing mom to make her presentable for dad had to stop. Since mom had not been able to move at all for the past two years, why were we still paying for a night aide whose job was to prevent mom from wandering? The 12 hour daily wheelchair torture was to stop! Despite my orders, whenever I came back to the Lodge I would find mom dressed and in her wheelchair with oxygen or being force fed again. I repeated my demand to not dress her and to only feed her if she wanted but never to force-feed her. Twice more I entered her room to find the aide forcing food into mom’s mouth. I clearly had to spend more time in her room to make sure my orders were followed.

The aide, as it turned out, had been mom’s night minder for five years. She was worried that if mom died, she would be unemployed until her agency found a new patient for her. It was in her own best interests to keep mom alive.

Mom’s Moment

On day 2 of mom’s new medicine regime, after dinner in the resident dining room with Dad, I went back to see her. She was buckled over in a wheelchair with an oxygen mask on. Holding back my fury, I told the aide to take the mask off and put her back in bed. I had left very specific orders NOT to move her or intervene in any way. I was forced, for one last time, to witness the gasps and cries of agony as mom was moved from the chair back into bed.

Once moved, I noticed her breathing was difficult. Each breath required all her energy as if she had just finished a long run. Then, her skin and especially her face had changed. There was smoothness, a glow that was entirely new. The deep wrinkles, her permanent grimace and stress lines that had exposed her intense suffering were easing away. That was how I knew her moment had arrived

Dad came to her room a few moments later and I got up to give him the chair and moved behind her to sit on the bed beside her. She reached for my hand and held it with a surprisingly strong grip. Mom could only lie on her side because of the locked position of her legs. With dad in the chair facing her, I had to lean over her from behind. With my right hand, I reached over to stroke her face, point out to dad how smooth it had become. Between her skin and her gasping for breath, I knew we were ready.

“Dad, mom is going to die now. Do you want to be here?”

He looked startled and stood up. He tried to apologize but I told him it was fine. I will take care of her.

My dad left the room, not emotionally able to watch his wife of 67 years gasping for her final breathe. Me? I was far too driven on fulfilling a demand to help her die, a demand she uttered as her last words; a demand that echoed in my head, no matter where I was, what I was doing, or whom I was with.

After dad left, mom wouldn’t let go of my hand so I was stuck seated behind her, on the bed, leaning over her so she could see me, while with my right hand, I continued to gently massage the tension away from between her open eyes. She was watching me and holding my hand tightly, more tightly than you would expect in someone so frail. I leaned closer and whispered, “This is your time mom. You can go now. I love you.”

We can read all we want into a silent, last moment. Mom kept her eyes on me, squeezed my hand then looked away, straight ahead, her eyes bulging a bit without blinking.

A nurse approached to say she had mom’s meds and I replied, “forget it, she’s dying.” “How do you know?”

“She’s not blinking.”

“But I have her new prescription!”

Ignoring the nurse, I whispered to mom, “It’s fine mom. No one will bother you now.”

Mom squeezed my hand again, slowly closed her eyes, and took her last breath. Her pulse, clearly visible in the hollow of her neck, was slowing then stopped.

Perhaps I deceive myself, but I believe mom’s efforts to squeeze my hand was not an involuntary reflex but her signaling her love, her final goodbye, her thanking me for finally ending this hell.

I stood up from my rather uncomfortable position behind her and noticed two of the Alzheimer’s patients holding hands at the foot of mom’s bed, smiling kindly.

“We need to get them out of here” the aide said.

“No. They are no trouble. Leave them be”.

The two elderly women I have ‘known’ for close to 5 years, gently stroked mom’s foot, turned to me and smiled, then silently walked out.

I moved to the chair dad had vacated just twenty minutes before, admiring the peace I so longed to see. Never having had any experience with death before, I was in awe of the smooth, gentleness of mom’s passing and my own calm in the face of it.

The aide, however, was clearly disturbed. “Is she gone? Is she really gone? How can you be sure? Is she breathing?”

“No, she’s really gone.”

“I’ve never seen anyone die.”

“It’s not very frightening after all, is it.”

At 8 pm Clara’s shift was over. Dad and I had already prepared an envelope with a thank you bonus. I said goodbye to the aide who had watched my mom these past 5 years. My sympathy for her years of devotion and her impending unemployment was lessened by the appalling, aggressive way she and others like her kept my mom alive.

Death with Dignity

Dad always thought ahead. In 2000 he purchased for himself and mom a cremation policy with Dignity Memorials – to be honored anywhere in the country by any of Dignity’s more than 2000 member network. Knowing mom was near her end, I followed up with the Las Vegas contract and found the closest Dignity mortuary near to the residence. Coincidentally, the morning of the 27th, I visited the office to make preparations for mom’s cremation. It was obvious I could not leave the detail work to dad and I wanted to make sure everything was ready in case I had to return home before mom died. Dad clearly could not be left with any decisions or fussy work. I had to make sure everything was ready for her, and also plan ahead for him, in case I was not there when he met his end.

After a wait of almost 40 minutes in a dark, dingy room, Matthew came out to greet me. He was a middle aged, overweight, rather disheveled African-American who warned me that he had been in the business for a while but is only now training for grievance interactions. He was anxious to try out all his memorized lines. I had to remind him several times that mom had not yet passed so my task was simply to make sure everything would go smoothly when her time did come. I signed my name on 18 blanks that assured dad’s previous contract would be honored, that cremation was what we wanted, that we did not need a fancy coffin, that no we did not require embalming, that we did not want a viewing or a ceremony, no rabbi or priest was required, and we did not need a $2000 urn.

“We certainly will respect your wishes, but can I point your attention to the benefits of final viewing and ceremonies?”

“Uh, no.”

“We do respect your wishes. Can I show you this magnificent urn that will express your love for your mom….”

“Uh, no.”

This sales routine went on for some time until finally I was able to escape back into the crisp, clear January morning and the traffic jams that always plague Aventura.

As it turned out, mom died that evening. The Lodge staff phoned the hospice staff who sent a chaplain to manage the death but had not given her the mortuary contact details I had sent them just that afternoon. By the time we found the number, it was after 9pm and the answering service took the call. The operator clearly didn’t know the protocol for picking up a body. The chaplain called at around 9:30 but by 10:15 still no pick up. We called again and I heard them arguing. The operator had not passed on the order to the pick up crew because she was under the impression only a hospital morgue or doctor could make the order. The chaplain, in an increasingly frustrated and angry voice said “No! I am the hospice chaplain. I am the only person you need to pass on the order!”

For some strange reason, the chaplain handed the mobile to me, “You try reasoning with her!”

“I can only pass on that information from a doctor. I was waiting for the second call.”

“There is no second call. Please pass on the pick up order. Thank you.”

By this time, it has been close to three hours since mom died and my thoughts drifted to my dad alone in the apartment. I was concerned knowing full well he will be battling head on with his ego and his emotions. But I also wanted and treasured these final moments with my mom. The chaplain meanwhile was convinced she had to introduce me to Christ in order to save me. Mom was Jewish and dad and I are atheists. An hour of forced politeness with an over-eager Christian was enough. Luckily the head nurse came in and suggested we try and straighten mom out before the pick up crew comes. I laughed. Mom hasn’t been straight for two years. The only way we will straighten her now is by breaking her. I realized then that when the crew did come, they may do just that to get her into a body bag. This was not something I wished to see. As much as I wanted these last moments with her, it was time to leave. I leaned over mom for the last time, again in amazement over her calm exit, kissed her smooth, cool cheek and said goodbye.

I thanked the chaplain and left. As I passed the nurses’ office, I mentioned that I would come back in the morning to clear mom’s room. The nurses seemed a bit flustered. I asked what was up and they replied the mortuary crew was at the back door but they couldn’t find the key to let them in! Enough! I laughed again, bewildered, and in awe of the sublime conclusion of a job finally done in relation to the utter silliness of reactions from professional staff.

The End Game

Death came with a grace and even a beauty unknown in the last dozen or so years since mom was diagnosed with Alzheimer’s, and most certainly absent from the five years of mom’s life in an Alzheimer’s unit. At least I, as the one in whose arms she passed, saw it like that. This was a moment I longed for; one I fought for against an Alzheimer’s system that seems to play on appearances and ease of care rather than what is best for the patient. Now I am left with that strange complex of grief and relief: the intense sadness and loss over the death of my mother, and the release of knowing that she will not suffer anymore.

We do not learn to deal well with death. There are no guide-books or self help books that give the answers in a time of urgency. Lessons are surely forgotten and we rely on instincts shaped by love and compassion – but also fear and dread. Alzheimer’s disease does allow us to slowly prepare ourselves for the death of a parent or partner, but we are also well trained to avoid the face of death in this culture. Life is sacred; death is shocking and horrible. My mother proved the opposite is also true. Prolonging her life, over-medicating her for a string of ailments she may or may not have had and with no means of monitoring its efficacy, force-feeding and maintaining that facade of normalcy to appease my father, (and keeping her alive for the income she generated for aides and Alzheimer’s units?) were, in fact, brutalizing and dehumanizing her. Should I be blamed for her passing? Perhaps yes. Had I not intervened, she may have continued to suffer for months or even years. The effort it took to protect her from further interventions was far more weighing and hard than it had any right to be. But I endured out of love.

There is nothing sacred in a life with no beauty, no joy, no dignity, no communication, no compassion. It is nothing more than a theater of the absurd, well staged for us to believe all is well. But the cost is immense, in financial as well as emotional terms. Prolonging the lives of the elderly who do not want to remain alive is cruel. They do it for us, against their own desires and needs. Death is merely a part of life and nothing more. Our own fears and false beliefs result in multibillion dollar industries cashing in on that theater, while also causing years of suffering for those unfortunately cast in the leading roles, those we claim to love.